The Encephalitis Society - January 2009
Encephalitis Professional Seminar, Plugging The Gaps.
Thursday 22 January 2009 13.00 – 17.00.
Neurosupport, Norton Street, Liverpool
For more information please contact
mail@encephalitis.info or call 01653 692583
The Meningitis Trust - March 2009
After Meningitis, Living with the impact of meningitis and meningococcal septicamia. The Meningitis Trust 2009 Conference, Wednesday 4th March 2009, at the British Library, London.
UKABIF Conference Programme - November 2008
UK Acquired Brain Injury Forum
Whither the NSF for Long Term Neurological Conditions UKABIF AGM and Conference The Resource Centre, 356 Holloway Road, London, N7 6PA 27th November 2008.
Trust-Ed Inaugural Conference - November 2008
After our first successful conference our second will be held on Monday 10th November 2008 at the East Midlands Conference Centre, so make a note in those Diaries. Download the latest form here.
Online booking is now available by using this link here. To see more information online please use this link here.
April 2008
Media Page Goes Live
We'd like to announce that our new Media and Downloads page is now live, currently we have Edwards Film for you to view online in our media section.
If you'd like to know more about any of our videos, leaflets, or media content, please get in touch via our contact form.
Happy New Year - January 2008
Festive Greetings To Everyone:
We'd just like to wish everyone Seasons Greetings and we hope like ourselves you have a great and prosperous 2008!
We would like to thank all those involved in helping set up and supporting Trust-Ed, and just a special mention and thank you to: Case Management Services at Rehab UK, 58-72 John Bright Street, Birmingham, B1 1BN who've decided not to send cards out this year but to donate to Trust-Ed.
Trust-Ed Inaugural Conference - November 2007
Trust-Ed was delighted to welcome over 200 delegates and 13 exhibitors to our first conference. This was held at the East Midlands Conference Centre, which all agreed was an excellent venue with first rate facilities – albeit a little cold in the auditorium at times!
The verbal feedback that we received during the day was so positive and attendees were clearly very appreciative of the range and quality of speakers. This was reflected in the written feedback via evaluation forms, in which 98.4% of delegates gave an overall assessment of good or excellent for the whole day. Some of the additional information included the following comments:
“brilliantly staged event”
“a great day”
“an excellent day – thank you”
“overall an excellent and stimulating conference”
“brilliant”
“what a triumph. Excellent day”
“the enthusiasm from all those who presented was invigorating and I leave eager to implement changes..”
“one of the best ABI conferences I have been to”
“thought provoking – first class impact”
“the most useful and informative training I’ve attended this year – great variety of effective speakers – thank you”
“the dedication to the children/young people with ABI shown today by the professionals who have spoken has renewed my faith in the future for young people”
“very informative and at times heart felt, very inspiring”
“brilliant day. Enjoyed and learnt from everything. Freshly inspired”
Delegates also offered sensible and considered suggestions for future conferences for which we are most grateful.
PresentationsThe day began in style with a moving and inspiring personal experience, described by Laura Bailey, a young woman who sustained an acquired brain injury in a road traffic accident as a teenager and while still at school. With Laura’s own determination and persistence, in conjunction with plenty of help and support, she managed to return to education and has just successfully completed a degree course in Fine Art. Her final exhibition towards her degree involved a series of pictures depicting Laura’s journey through the years following her injury. She used slides showing her art work, along with some photographs, to illustrate her presentation and the impact was very memorable. Laura herself was so excited to have the opportunity to share her story and delivered a strikingly confident performance. She emphasised the fact that, without appropriate and different educational support and provision, she would not have been able to achieve to the level that she has or to have made so much progress academically and personally. She also said how much the whole day had helped her to consider the difficulties that other people face and to assist her to consider her own situation in a different light.
Dr Judith Middleton, paediatric neuropsychologist and Chair of the Child Brain Injury Trust (CBIT), then set the scene for the rest of the day with clear descriptions of the effects of ABI in childhood and how the needs of these children differ from those of other children with learning difficulties. She explained the importance of considering the child as a whole and in the context of the wider family and community and with regard to social and cultural differences. She discussed the functional manifestations of problems, for instance with memory and language, with regard to everyday living and school performance or potential. Finally, she discussed ways in which provision could be changed in order to meet the needs of this population of children.
Professor Roberta DePompei, director of the School of Speech-Language Pathology and Audiology at the University of Akron, Ohio and co-chair of the Brain Injury Association of America’s Task Force on Children and Adolescents, then specifically focussed on the cognitive-communication and learning difficulties provoked by ABI. She began by highlighting the differences between formulating goals for adults and children following ABI, before describing the neurological basis for the changes and challenges that are provoked by ABI in childhood. By use of video animation, she was able clearly to demonstrate the functioning of neural networks and the means by which new learning is acquired. She described the most efficient learning process (strategic learning), utilised by those with the highest levels of ability and pointed out that those with lower ability levels, for instance after ABI, may be learning as much but less efficiently or selectively. (“The important part of learning is NOT about how much you learn, but rather how efficiently you extract the main point of the central meaning (Gabrieli, 2004), how efficiently you exclude irrelevant information so not to use up vital storage capacity (Vogel et al, 2005)) She pointed out that people with ABI, and therefore strategic learning impairment, may well store as much information in memory as others, but just the wrong information! Roberta discussed the optimum times for intervention to maximise potential following ABI. When assessing the cognitive impairments affecting language and learning, she stressed the importance of talking to the child and asking him/her what helps or hinders his/her functioning in the classroom. Finally, she explained practical strategies that have proved useful in supporting children with the specific cognitive problems that she had highlighted.
Dr Ron Savage, Vice president of the North American Brain Injury Society and former director of paediatric services for Bancroft NeuroHealth in New Jersey, The May Institute in Massachusetts and Rehabiliitation Services in New York, then considered the concept of interdisciplinary assessment and educational planning. He explored different models of provision and the advantages/disadvantages of each. He then considered how different agencies and professionals can interact with each other and with the child and family in order better to serve the needs of these children. He discussed how separate assessments can be combined and recommended tools enabling functional assessment of multiple areas. Interdisciplinary work requires efficient professional communication and Ron explained ways to promote this. He also discussed referral systems and appropriate policies and procedures to ensure that the model is effective. He emphasised not only the need for a team approach, nor just the need for an interdisciplinary team, but a linked and well co-ordinated team in order to produce the best results.
After the lunch break, the first presentation was a compilation of talks by young people who have sustained an ABI, their family members and teachers. They aimed to demonstrate the “Positives, possibilities, problems and pitfalls.” Initially, Zac Day, a teenager who was injured in a road traffic accident 3 years ago, spoke about the difficulties that he had faced returning to school, despite the additional support that was provided for him. He talked about his continuing interest in sport and his current placement at a specialist further education college, which has provided him with a more positive educational experience. Zac was, understandably, very anxious about delivering his presentation, although he was very determined to do this. He had someone on stage with him to provide support should he require it, but he managed to say everything that he wanted to independently – a great achievement! Felicity Marsh, an adult sister of a teenager who sustained an ABI in a road traffic 6 years ago, then very eloquently described the impact of this on the family as a whole. It is very easy to forget the ways in which the difficulties and stresses provoked by this can affect not only the child and parents but also other relatives and how all their lives are altered. Felicity provided a very honest and courageous account which all those present felt privileged to hear. Anna McDonagh, who is the parent of a 17 year old son who sustained and ABI in a road traffic accident 10 years ago and also a Director of Trust-Ed, then spoke about her son’s miraculous journey from an early stage with very little functional ability to the happy well-adjusted teenager that he now is. He has significant disabilities, but has been enabled to achieve great success both personally and academically, with the help of considerable additional support. Anna had arranged for a film company that is supportive of Trust-Ed and its aims to make a short film showing Edward at school and at home and with his older brother in order that both her sons could also contribute to the presentations. This helped vividly to demonstrate the ‘positives and possibilities’ for those with ABI and their families when appropriate support and resources are provided. Dave Eland, a special educational needs co-ordinator at a mainstream school to which a girl with ABI recently returned, then spoke about the difficulties of addressing the needs of a pupil who suddenly returns to school with a range of acquired and unusual difficulties. He explained some strategies that had been helpful towards addressing her needs, but emphasised the amount of time and resources that this required and the level of additional information and support that school’s need. Finally, Maurice Bartishel (Bart), the deputy head teacher of a special school that a number of students with ABI have attended, spoke of the differences between these young people’s needs and those of others within the special school population. He emphasised the need for different provision, and high levels of support from other professionals in order to ensure successful placements. He was honest enough to admit that when the school had attempted to meet the needs of ABI students previously without this additional support and information, this had been unsuccessful in contrast to the situation for current students. A definite warning of the ‘problems and pitfalls’ as well as the ‘positives’.
Dr Ron Savage and Professor Roberta DePompei then jointly spoke about working with families. They described typical models of provision in which ‘experts’ (professionals) identify issues, decide how to address these and provide what is deemed to be necessary. However, they posed the question, ‘Who is the real expert?’ Professionals do have expertise, but they pointed out that so do others: The person who lives in the disorder and the person who lives with the disorder. “When in doubt, trust those living with ABI!” They spoke about the impact that the child’s ABI can have on the whole family and how members of that family may adopt different ways of dealing with this. They described different coping strategies and the fact that these must be understood and respected. They also highlighted the need to understand the different ways in which people communicate and why it is important to consider this when talking with family members or professionals. They explored ways of including family members in a meaningful way when planning and providing services for the child.
Finally, Dr Nick Armstrong, a barrister specialising in public law, including education and community care, discussed the reasons why children with ABI are often failed by statutory education services and explored the legal rights of parents to obtain appropriate educational provision for their children. This was the end of a long day, but Nick was able to explain aspects of education law in a way that was interesting and understandable to all those in the audience. He very clearly explained what should be provided for children and how parents can follow initial referral procedures and then appeal routes in order to ensure that local authorities provide everything that can be reasonably expected to meet an individual child’s needs.
Following an explanation of Trust-Ed’s aims and the reasons behind its existence, the day was summarised and concluded very eloquently by Dr Jonathan Punt, barrister and former consultant paediatric neurosurgeon, who had done an excellent job Chairing the conference throughout the whole day.
After our first successful conference our second will be held on Monday 10th November 2008 at the East Midlands Conference Centre, so make a note in those Diaries.
Trust-Ed Online Forum- November 2007
Trust-Ed has now activated the online forum, so why not register to share your ideas or to raise questions?
Trust-Ed Printable Membership Form - October 2007
We have an online printable membership form for those who wish to become members of Trust-Ed and receive up to date communications from us. Information about how to donate is also available. The form is printable only, though you can fill your details online first, print, sign and return the form by post. An online version will be available soon.
Trust-Ed Online Questionnaire - October 2007
We have an online questionnaire for young adults with acquired brain injury that we would be grateful if you would take a few minutes to complete. No personal or contact details are collected. Your contribution will really help us to plan support for other young people.
'The questionnaire will help us to identify regional areas, ages at injury, types of brain injury, types of schools attended, the level of support given at school, qualifications received, and subsequent employment history.
It also enables those filling in the questionnaire to leave their own comments at the end of it.Please use this link: Trust-Ed Questionnaire
Trust-Ed Inaugural Conference Details & Download - June 2007
Trust-Ed Inaugural Conference:-Education After Acquired Brain Injury - The Way Forward, Monday 12th November 2007. Details contained within a PDF file can be downloaded here. For those wishing to view in HTML please view here.
Trust-Ed Inaugural Conference Announcment - June 2007
Trust-Ed Inaugural Conference:-Education After Acquired Brain Injury - The Way Forward, Monday 12th November 2007.
Trust-Ed ABI Services - June 2007
Trust-Ed ABI Services now have a charity registration number & company registration number
Trust-Ed ABI Services Reg. 06068233 / Reg. Charity 1119827
Trust-Ed Launches it's Logo - June 2007
Trust-Ed launches its very own logo.
www.trust-ed.org website launch - April 2007
Trust-Ed launches it's very own website. It is still being worked on and updated, it will provide a point of contact and reference online for people to see. Online Contact form added, plus new pages created.
